Judy posted on the Who Am I Thread a while ago and I though a new thread would be appropriate for the situation. Maybe Joan might want to move her post to this site. Judy I hope you don't have to give up your dream of having an Art Studio in your home. It seems like all of us are giving up dreams, adjusting lifestyles , etc.
If at all possible I would encourage you to continue pursuing getting your Art Studio in place as fast as possible. He will, no doubt, continue to bug you with the same things but you will at least have your own private place at times and be on the premises for the stages coming from the disease. You will be able to keep him home longer and delay placement.
My dh also will pick out a word I have mentioned in the last hour or even last few days and add to it like yours does. I have a heck of a time figuring out what he is talking about at times. He thinks I am going to leave him and told somebody of plans I have made. Not a bit true.
If you don't get your place of privacy you will build up more resentment.
Judy CommentTime6 hours ago edited edit delete Hello out there.. I posted a comment that didn't go.. But woke up this morning feeling completely overwhelmed and nearly hyperventilating because I feel that I NEED to get out of here for a while. Makes me feel silly to see that so many of you have all the 'nursing' duties as well as supervision, when My DH is physically able to do so much for himself. He needs provision of meals, medication and supervision of laundry (mixes dirty clothes with clean in the closet and hangs dirty with clean in his room)..and a driver to take him to feed the cows (grandson) or errands (me). That said..the new years optimism for making a fresh attempt to set up a home art studio and etc. is fading fast.
I find that I can't have a conversation on the phone about art business without explanations that DH doesn't understand. He read a title on an art show application and misunderstood it to mean that I was going somewhere on a plane because one word in that title said 'southwest'..as in Southwest Art. For some reason I feel exhausted trying to explain these things and finally feel that its not going to be possible to do much of anything here.
Anyway, thats a whine for this day...and its early..maybe it will be better.
I added Judy's comment here, and I do think this is a good topic. Are any of you losing your dreams? Is it possible to fulfill our dreams "after" AD? During it? Anyone have any comments?
In this AD world....especially when stages 6-7 are entered into.....how can we hang on to any dreams at all. The care and the daily reality of the situation makes it really hard to think of much else. I do, however, believe that the human spirit is programmed to survive. Survival in itself is to dream of better times........times when we can once again find ourselves and remember what it was like to live a normal life. No matter how frustrated or sad or wore out I get, there is always that little light in the back of my mind that says "this too will pass." Not too long ago, I made a list of things I planned to do and places I intend to see. It's tucked away and for my eyes only but it's there.
Judy, I agree with Imohr, who said it beautifully.
Joan, I waited for someone else to go first - it seems like I jump in too quick and sometimes am too blunt. I don't have the soft, nice words of the others here.
I had dreams as a child of what I wanted my life to be like. As a teenager those dreams changed. When I was in college and fell in love with my husband and married him, I came up with still another set of dreams. Those dreams were different from the first two, yet I didn't feel their loss. If anything, my future looked brighter than I could have imagined. And, reality even exceeded those dreams - until AD arrived.
We had both stated over and over that we had been so blessed in our lives, and our dream was to be able to continue to travel with our friends, visit with our children and grandchildren, and make plans for more trips. Well, traveling with our friends has now stopped. They come to visit us between their trips. My husband doesn't really know them, but acts like it. I admit that I envy them their continued travels. And I'm not making any plans for after the caregiver cruise.
My favorite saying has been and still is "When you come to the end of your rope, tie a knot and hang on" and I'm hanging on for dear life. <grin> My husband and I had dreams for three more trips, and after, I'm taking them for both of us. I have no timetable, nor any details, just the places he wanted to see. That is my dream now.
Those of you who are younger have more dreams to be fulfilled than us older folks. Your dreams are your hopes, and you should never give up on them. I hope you all set goals for your dreams, knowing you may have to alter them, but keep on keeping on. Our spouses would want us to. It helps us get through the rougher days.
Judy as others have said don't give up, hopefully you can adjust your dreams to fit this part of your journey. I say your, just as I would say mine, cause I truly believe that for some unknown reason, I am where I am suppose to be right now in this life. Otherwise I would be somewhere else. I just try to make the best of it. It's not fun, but I guess I will get something out of it in the end. (probably patience) Who knows. I hope you can find the time and space to do what you love thru this. I had to give up one of my passions (Hair) for now, because I just felt Dh need more care. I don't like it, and I miss it. I get mad when my friends complain about having to work. At this point cleaning motel rooms would be a pleasure! BIG GRIN! I think not being able to control our own destiny is the hardest, cause the immedient destiny is a daily unknown. But don't let it squash your dreams, maybe as I and others have said adjusting them for now or just having the dream for a little longer than you wanted. Hang in there.
Mary, you made me cry , thinking about "us" younger ones. And your right in that we have to alter them. It's just something that no one expects, yet once we are faced with it young or old, we have to deal. I remember when Dh was first diagnosed I was like OK, I guess I will just reinvent myself when it's all over. For now I will do what it takes to create the best AD journey for him. Isn't easy, Isn't fun, but it 'is" what it "is". Robin
Yes, we lose our dreams together. At this point in the Dementia Tunnel all I can think of and accomplish is caregiving for FTD husband, our family, our dog, home maintenance, lawn maintenance, grocery shopping, meal prep., etc. You could say I have "tunnel vision".....I really don't want to be here, I want to follow my own visions. Sad really......
Please don't give up on your dreams, your hopes. You need them. I'll be the first to admit that we often have to make adjustments, but we can do that. Look at what we've done already.
I prefer to call them projects. not as romantic as 'dreams' or 'hopes.' But 'a project' works for me. You may remember we were all set to go to Italy with friends. A 2-week trip to Rome, Florence, Venice, etc. DH was looking forward to the trip. Couldn't wait. I had made all the arrangements. Paid for everything, etc. Thank Heaven I bought trip insurance. Two weeks before the trip, he announced loud and clear that he wasn't going. He said I tried to run his life and if he wanted to go to Rome, he'd go and he didn't need any friends or me, etc., etc., etc., I tried arguing with him for 3-4 days and finally gave it up. I called his PCP and his neuro. They both thold me it would be a BAD idea to go even if he changed his mind.
So, I started the 'project' of canceling the trip and getting a refund. It only took 90 days, but hey, what the heck. I took the $$ added A LOT MORE $$ and did a kitchen remodel and reroofed the house. That has been a 'dream' of mine for many years and now it's done! See what I mean??
I'm sitting here pondering what my next 'project' will be. Whatever it is, it won't cost too much $$ but it will be just grand. I'll let you know as soon as I figure it out.
Mawzy, I am so glad you got your remodel project finished. Doesn't it make you feel better being surrounded by all the "new". It is a pick me up I wish we all could share. I will tell you my new tall windows make me feel better. I can sit in my recliner and watch the birds and deer at the bird feeder and love all the light. In our old house our windows were short high ones and you had to stand to look out.
Mawzy, I'll bet your new kitchen in gorgeous! We just re-did ours somewhat- not totally. My DH will go in there every few minutes and I'll ask what he's doing or what he wants and he says, "Nothing, I'm just looking in awe". He's still having a little trouble finding stuff though.
Mawzy, I guess you are right. I need a project! I will have to think about it some. The time I start to think is when DH is asleep for a little while. It is the only time that he is not velcro boy or in NEED of something or having to be kept track of. I used to sew, but I really can't now because DH is NEEDY every few minutes. I used to do pet therapy with my beloved Boxer, Elmo. I suppose I do have a project in the works.......I have a new Boxer, Gabriel. Hopefully, I can get him to do therapy at some point in the future. But now, now, now......? It's all about DH, isn't it?
I feel that I'm losing even my "modified for AD" dreams. I went to see the Alzheimer's unit that's in The VIllages where I live. It had been the first such place I had visited and I wanted to ask more questions and refresh my memory. Yes, it was indeed as lovely as I remembered it and could almost be affordable and he would be close to visit when the time came. Then reality hit....he could go there now and fit right in because they don't keep the Alzheimer's patients once they can't assist in their own care! Well, my husband can't assist much in his own care now...I'm looking for a place that will be able to help him when I no longer can. So unless I want to pay a lot of money for someone else to do what I'm doing now, that place is off the list. And in talking to the director, she was suggesting that I start looking at nursing homes or skilled nursing places to be prepared. I had brought my husband and she was pretty much saying that I could put him there now and then pay even more money as soon as he got to be too much to handle. I can see why we continue to care for our spouse at home....he makes too much in pension and SS to qualify for Medicaid (and he's not even 65 until June) and not enough to pay the big bucks that the places I've looked at charge.
Ya' see? Gabriel is your new project. He's going to be wonderful for you to work with. And, yes, you are correct. It is all about DH now. But right now, mine will wander off downstairs or into another room. Just as often as not,he falls alseep and I have a few minutes to myself. I'm glad of that. When he's awake, he wants to be right with me and he asks all kinds of questions. Some I can answer. others I can't. I asked him "why do you want to know that?" He didn't know. Our conversations seem to run like that. Do you ever feelike you're going mad? I do. I sometimes find that I have a hard time keeping up a coherent conversation with other people. Actually, I find myself feeling rather stupid a lot of the time. And, I find myself chattering too much. With my vision fading rapidly, I don't recognize faces much now. And, I can't read a lot of stuff (like the sign on the coffee pots at church for decaf, regular, hot water, etc.) and when i ask what that says, I feel really dumb. Makes me think people think I am illiterate.
Well, that's enough of my pity party. Talk to you later.
Mawzy, I am sure your friends know you are not dumb. They know about your eye problem. A good friend of mine has Macular Degeneration and she plays the piano. She played for a quartette for 50 years and also at Church. She still plays at Church by mostly memory. Her husband sets up 2 Hi Wattage lamps for her and had Middle C marked on the piano. She always had her hair done every week and still does and dresses very upscale. I don't know how she does her makeup without seeing. I must ask her next time I see her. She still does mascara.
Oh gee, Mawzy! I also feel like I am going mad. The conversation here is practically non-existant. Just the basics and even then.....DH doesn't understand simple stuff. This is the only place you can tell folks what you really think and how you are really feeling. Please don't feel that you are stupid or inadiquate. I know, being isolated is what makes us feel dumb.....really just numb! We are the ones that don't have outside jobs that stimulate the mind with new contacts and new ideas and are on the firing line all day and all night....all the time.
One of the boards I am on meets from 5-6:30. For the past several years DW and I have gone to a nice restaurant for dinner after the meeting. Tonight I realized that she would be no company at the restaurant, so why bother. Instead we came home, I microwaved a TV dinner, and we sat in front of the TV watching Jeopardy, and then Campbell Brown. After eating I think DW basically slept through the whole thing.
One thing that bothers me on TV, relating to dreams, is the ads for vacations in exotic spots around the world. DW and I loved to travel to these places. Now I can only dream about them and realize that we will never go there.
I can relate with you marsh. We loved to travel. Me more than him. I thought after we retired we would do some, then Mom had to be taken care of and before you know it dh was not able to go. By the time this is over, I won't be able to go. I am thankful I got the new home to enjoy. And enjoy it both of us do. Boy, how would you like to read an essay I wrote?
Marsh, like you, my husband can offer no conversation, so I don't see any reason to go out just the two of us. I only go out to eat with my husband when my daughter goes with us so that I have someone to talk to while we eat. Otherwise, we eat at home now.
Mary-sorry to post so late. When Bill was still home we often went to the same restaurant where the staff knew us. I never explained the problem but our usual waitress was great. She's say to Bill-I know what you want to eat-same as last time-right. This saved him having to make a choice. She would come by to chat and it was a nice outing.
We go every Sun. morning with a group for breakfast. We know all the waitresses and they know he has ALZ. They always tell him they know what he wants - same as last time - and it works very well! I have found that most people are great if they know there is a problem. And if we go someplace different, I try to manage to tell the waitress, etc.
Do I have projects? Yes and no. There are some things I can't do with my husband around, like quilting on a sewing machine, because I'd have to start and stop and PAY ATTENTION and I can't do that.
I do digital scrapbooking, mostly when he is settled down doing something, or when he is off on one of his walks (still can do those and come home on his own) or when he is asleep. I don't have anything to clean up or put away and I can stop it on a dime and return (to close down if necessary).
I'm stymied on knitting or crochet because I want to do something elaborate (a lace shawl) but know that I can't plan on concentrating on it. I started a project months ago, got bored and haven't finished it. Don't much want to wear it either, but I'm one of those people who just can't throw it all away. Need to do some of that. <grin>
Mary, that was a beautiful post. I think your outlook on surviving AD is kinda like my own. I have to see the humor and positive sides most of the time to balance out all the misery. i seem to thrive on yin/yang:) the fengshui concept i guess of yes/no, postive-negative/light-dark//concepts to feel balanced. too much of any one side sends me into a tailspin. so i tackle AD much like that. just to stay sane. dreams? my dream came true when i married the man of my dreams. DH was one of the most eligible bachelors around. he was 20yrs divorced ,super nice, radically intelligent, handsome,wealthy, and my dream man-and we fell madly in love-. i knew when i turned around at our wedding and looked out into the mass of smiling faces, it was 'doomed' right then and there, by so much envy and jealousy; it was. just too good to be true and i found out later 'family=friends' tried to talk DH out of it!!, and sure enough as my insight had forewarned, DH was struck with AD only after a few yrs into marriage. i believe in the ability to impact a person with negative energy, and i see it all the time. thats why i try so hard to project my own positive forces. i am still surrounded by negativiity from family and 'friends'. so i do distance myself by choice. as far as future dreams, yes if i can survive and come out the other end of the tunnel with some reasonable ability to provide for myself both mentally, physically and monitarily, i plan to also re-travel those places DH and loved so dearly. it will never be the same without him, and i my 'insight' tells me it will be a long time recovery period for me personally. my whole life til that point is dedicated to him,( knowing at the risk of losing myself along the way) -just attempting to make his life the best and most comfortable while i still have him with me. it will be interesting to find out what the 'me' that is left is all about. Divvi
Oh my gosh....I've gone through so many different moods from the beginning of this thread to now. I could write forever, so much I want to say but I'm feeling too much and am too tired....will get back to it after I read through all your posts again.
But MAWZY!!! I LOVE YOU! Where do you live? My next project will be to hunt you down and take you to lunch! And have a little $$$ project together. Oh my, when I think of some of mine of late. Another story. I'm glad you introduced the word "projects" I was feeling so low over my lack of dreams. I'm still at the "hanging on to the knot in the rope" stage as I try to adjust to this shift in my life - DH diagnosed early 2007, but his behavioral "symptoms" as I now see them had me feeling hopeless and depressed in my marriage from 2003. I spent most of 2006 pulling myself together, got into the best shape I've ever been in, felt strong, attractive, and was finding again joy and hope. Then by Jan 1 2007 it became clear his behavior, lack of interest, initiative, self-centereredness (well we all know) was neurological, and I started using the strength I had worked so hard for for this journey. On the "age" thread I posted I am 57 going on 85, and that's barely a joke. In these two years I've gained 40+ pounds, look awful, and am now in that vicious cycle people write books about.
Judy, you build that art studio. You just DO IT. Do it, you need it, you'll regret it if you don't and I have a feeling I'm not the only one who will benefit from the very act of your doing it. Do it for the team girl! I built a meditation space for myself. Not exactly working out like I "dreamed" but I'm inspired now to GET IT THERE.
I'm going to re-read this thread tomorrow. I was so moved by all of you. Heck, I feel a crying spell coming on, but these tears don't feel lonely. It almost feels like a great big pajama party. Would that be cool or what!
Hip Hip Hurrah for you Terry!!! You can do it, I know you can. I have also put on weight the past few years. Don't watch what I eat well enough and don't exercise like I should and feel so "weighted down". I know I would feel so much better if I could lose 20#. So much lighter on my feet and more agile to say nothing to the boost in my self esteerm.
My big project was building my dream house and we are so happy to be in it. It was a giant struggle doing it and about did me in but I got it done. Never having any experience with a project this big, I THOUGHT you hired a contractor, went over the plans with him, the contract you signed and waited for moving day. I knew it was NOW OR NEVER>
Things don't work quite that smoothly. Seldom do things go "smoothly".
I am thrilled you are now posting and hope to see you back more often.
A pyjama party--how fun! I just made a huge big vat of popcorn. Do you want melted butter on yours? or are you guys all being consciencious and watching your fat intake? That's no fun!
From the sounds of it, we all need to go on a big huge diet. Who is it that needs to lose 20#? I wish that was all I had to lose. I've gained so much weight in one year. I had to give up my water aerobics because I can't drive over there every day. And I wouldn't want to leave DH for 2 hours every day now anyway.
I think I need to make daily walk a 'new project' and dig out my Weight Watchers' material.
ps--Terry, FYI, I live on the Pacific coast. Puget Sound area about 25 miles south of Seattle. Where are you? I am 77 years old (78 in April). I'm not geting any younger and feel FAT but my BP is good and so is my A1c count. All my numbers are great. My doctor said he was going to frame my lab report and hang it on the wall. I told him I didn't want him to do that. All I want is a gold star on my chart. So far, he hasn't done either. I think he's all smoke and no fire....
Mawzy, the popcorn sounds wonderful. I love popcorn but gave up the buttered a while back. I microwave a Orvil Retenbarger bag every night and take it to bed with my laptop,] and book.
I am the one needing to lose 20#. I have a small frame and am short. I would have a problem navigating if I gain any more. I have BP, thyroid and heart pretty much under control now. I hope you can go to sleep after your popcor.
Oh wow, dear friends. I'm up early and my eyes are 'leaking' all over this computer. Thank you so much. This week (or maybe its just been a 'gathering of too many weeks') for some reason has been such a constant constant, that I felt like a fish or something trying to breathe. Yesterday, I just took a day off.. and told a fib so that DH wouldn't want to come along.. It helped enormously.
I went over to the gallery of one of my artist friends and we talked art for awhile. A visitor from England stopped by and we listened as he told of his countryside and the beauty of the land around York and Scarborough. He told of the pastries and breads made in his 'hamlet', which is too small to be a 'village'.
Sitting with a cup of tea, looking at the paintings and visiting for that 90 minutes was pure oxygen. I was invited to teach art there at the gallery on Saturday afternoons for one hour! (?) Not sure if that can work out BUT it might. I do so thank you all so much. Its scary to get so bogged down that I lose sight of those things that are POSSIBLE in situations like ours. There are things I believe we MUST try to do to enable us to actually HANG ON. Also, the word project..is great because it causes me to think that it can actually be done. And the studio 'project' WILL continue...for which I can't say thank you enough for understanding..
Judy, I hope you can find a way to free yourself to teach that Saturday afternoon class. It's just that kind of activity, totally divorced from the AD world, that helps give us strength to keep going. It's so important to have something of our "own" to remind us who we are outside of AD. Go for it!
Mawzy: Puget Sound - sounds like an exciting place to live. I lived 22 years in the San Francisco Bay area, then moved with hubby to Northern Virginia, Washington D.C. suburbs, then after dx moved us out here in Sept. 2007 to Eureka Springs, Arkansas. A little Victorian village in the Ozarks a few miles from the Missouri border. A quaint and quirky tourist town - maybe the only, at least the first I think, entire town listed on the historic register. It reminds me of San Francisco.
Judy: Yippee! Can't wait to follow the progress of the art studio.
lmohr: Thank you for your kind words. I may start a discussion about renovations. Would love to hear your experience and your "dream house." We moved into this house - a total reno with me as the default GC - just before Thanksgiving.
My neighbor and friend today asked me as she was driving me to get new tires on my car, "Have you put together any good puzzles lately." I looked at her and said "I don't have time for fun." The poor lady had not idea what to say and changed the subject. She is a friend who really doesn't want to talk about/know about my DH's AD, so...there was nothing more to say on that topic. I am determined to NOT become a statistic and be around afterward for my kids and grandkids and hopefully one day great-grandkids. Some days I'm not so sure I'll have the stamina.
LibbySD..........This AD life we live in brings question many times if we have the stamina to make it through to the next hour. People really do not know what to say other than how is he doing........and what is there to say back. AD doesn't get better......so do you say he's doing good or do you say he doesn't get better. I don't know, I guess we do the best we can at the moment. As sad as life can be right now, we have to know that this too will pass and we will go on. Thinking of you and hang in there.
Need to loose Weight - I was sitting here tonight thinking about a conversation with DH the other day. He was being 'frisky' and that is the last thing I am in the mood for. I got to thinking back about how in 1985 after he was diagnosed with detached personality disorder (or was it pre-AD), we lost our business, home, etc., he no longer participated. He still worked hard but became an 'old stick in the mud'. If he hadn't, we would have kept going camping, hiking, bowling, playing softball, etc. and I probably would not be 100 lbs overweight. I would have gained some, but not as much. Every time I have started on my dream -he sabotaged it. I guess our dream of working as we travel the country - he has sabotaged that too (only this time he had no control).
I saw this post of yours around 4 a.m., after I brought my DH back inside. Somehow, the last time I took Kali out to poo last night I forgot to lock the deadbolt. Since installing the keyed deadbolts this was the first time DH "escaped." I think the snow that fell last night, under the porch light made him think it was daylight. Sheeesh! Then I realized I hadn't given him his pills late last night. So he got those at 4 a.m., but he's still awake. Eating something now, so I went ahead and gave him his daytime pills. Sheeesh again! It takes and elephant dose of anything to keep him down.
Anyway, back to the subject of the thread. Yes, I think my DH in the earlier years intentionally sabotaged my plans for OUR family. I considered my plans "OUR" plans. Things we discussed together. Pipe dreams. Things we promised the kids we'd do. Well, now I realize the changes in plans are not intentional in the past few years........but I have to wonder if we had acted on plans for ourselves and the kids at the time we didn't have the AD excuse, might we have actually fulfilled some of them. Moving from sunny Santa Barbara to the NW was a huge thing. But we were going to live near Cousins, Aunts and Uncles, who were going to teach the kids to ski, snowboard, and we'd do alot of fishing, boating, camping and hiking which I loved to do. We were going to landscape and enjoy our 2+ acres in a small town since gardening was DH's passion.
Long story short, the kids never got to learn snow sports, and we have gone on ONE hiking adventure about 6 years ago. Not that we haven't been invited in the past. Everyone knows better than to expect us to accept and invite. DH worked out on the property with me the first year, BIG TIME. The second year he waned alot. NOW? He can't!
I feel no shame in saying I hope this is over soon so that I can live a little and fulfill my dreams. The kids aren't kids, but I'd still like to do so much with them.... like live their entire teen age years all over again.
It is not so much losing my dreams but the lost of freedom that bothers me. Freedom has always been important to me. I was raised in a very strict family. After finishing school I left home to live with 3 girls in a one room with a hot plate to cook on. It was wonderful to be able to come and go as I pleased. I worked and had a pretty good life. I married at 28 which in my day made me an old maid. On my wedding day I thought what are you doing.....You are giving up your freedom. I found that marriage did not mean you couldn't be your own person. We will be married 54 years in June and we have had a good life. It is just the present that is so hard and heartbreaking. We have no social life and he does not want to leave home. So I am here all the time except for short trips to run necessary errands. This is not what I expected my life to be but it is what it is and I try to make the best of every day.